Crochet, Kidney Disease, and Candor

Monthly Archives: July 2012

Well, my life just became a lot fuller. I’ve got two pounds of fluid in my abdomen, 60+ boxes in my living room, and a regular schedule of daily dialysis exchanges, blood pressure measurements, and symptoms checklists to go through. Right now I feel like I’m living in semi-controlled chaos.

Now, anyone who knows me knows that I have a driving need to be in control of my life. My mom tells a hilarious, and true, story of the first time she held me in her arms. She says that I looked up at her like I was the mother and she was the child, and I expected her to obey. Not much has changed since that day. Except that at various intervals throughout my life since my senior year of high school, my life spirals completely out of my control, and I have to deal with it.

Our reorganized bedroom, with my dialysis machine next to the bed.

I finished dialysis training last week (they make me train every time because making sure everything is sterile can be literally vital), and I am finally using my dialysis machine, or cycler, every night now. I’m also on some strong doses of epo and iron to combat my anemia, so I’m feeling better. In addition, we had to rearrange our bedroom to fit in all the boxes containing my dialysis supplies, and, surprisingly, we actually love the way everything looks now!

My dialysis machine. Forgive our geekiness, but we call him R2PD. I mean, if you’re going to have a droid in your house, you must name him after Star Wars, right? (Sorry as well for the blurriness: shaky hands.)

All of that is on the plus side. In the negative column are some other aspects of life with dialysis. I have to eat so much meat, every day, for every meal. Before all you carnivores out there pooh-pooh my wee little burden, let me tell you, I have seen big, masculine, steak-and-potatoes men on dialysis complain about how much meat they have to eat to keep their protein levels up. It’s a lot, and it’s hard for me. (I was a vegetarian for seven years before my first stint on dialysis.) I’m good at eating protein for most of the week, and then I have a day when I want to beat my latest chicken breast with a blunt instrument and bury it in the backyard. (I’m pretty sure no one would come looking for him.) What saves me in this situation is two-fold: 1.) I love to cook, and finding fantastic, new, meat-laden recipes can be enjoyable. 2.) Sushi. I never get tired of that particular protein. There are also other aspects that are not so fun (my stomach isn’t as flat anymore, and my clothes don’t fit as well; I have to eat Tums before every meal; every activity has to be shoehorned into my dialysis schedule; etc., etc.), but I don’t need to go into all of that now.

Thus, my comment on how very full my life is. It’s not just the physical aspects of my days that have expanded, though; my life also feels full of gratitude and contentment. The last time I wrote I was at a low point: I had been stuck in my bed and in pain for weeks, and I was having a hard time seeing the positive. My post was sufficiently negative, in fact, to warrant an emergency phone call from my mom to check on me. (You can tell it’s an emergency call because she phones Kohl rather than me, in order to make sure she gets the real dirt on how I’m feeling. That woman constantly surprises me with her insights into my character.) Since that post, as I healed and quit feeling sorry for myself, and as my anemia and its resultant weakness were dealt with, I started seeing all the sun-dappled beauty surrounding me again. It is summer in the Avenues of Salt Lake City, and that is a beautiful situation in which to find oneself. I’m well enough to go on walks again, we have wonderful friends with whom we spend time, the farmer’s market is bustling, and everything around me is growing and green.

Moreover, I am slowly exerting control over those things which I can. I can’t control the fact that I have to make time for dialysis, but I can utilize my free time as productively as possible, and you can be sure I am using the time while on my machine for my own projects. My diet has been taken out of my hands, but what I do with my food regimen is creative and healthy, and, after talking with other peritoneal dialysis patients, I’m contemplating coming up with a cookbook of my recipes. We may have had to put adoption on hold again, but I am using this time to make sure our house, affairs, and finances are as perfect as possible, so that we are completely ready to welcome the little person who is supposed to make another link in our family circle as soon as we can. I may not be able to control many, or most, aspects of my life right now, but I will be fine, because I am stronger than my disease. In all honesty, I should probably say: I am stronger because of my disease, and that strength, I suppose, is worth the loss of a little control.

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I’m a border girl, linguist, avid reader, devoted crocheter, ghostwriter, two-time kidney transplant recipient, former blind person, new mother, and wife of a filmmaker. I believe with all my heart that happiness is a choice and strength is a habit, and sometimes I am actually able to put that philosophy into action. I want to be better than I am, and the only way I can think of to do that is to look for the beauty and delight that my difficulties throw into sharp relief.

Silver

I had stopped writing
and seldom sang
Magic had withdrawn, or been disguised
by hard gray facts
and bleak procedures
I was alone
darkened
all the silver
in my soul
had been washed out
by machine
leaving only the taste of cold metallic water
and all I knew anymore
was how to be realistic and tired
It was a remembrance
of when I could hear fables in the wind
and would sleep bathed in white moonlight
like a film of beauty on my skin,
that awoke me
Tubes and fluids and dullness of soul
are not me
I hold an argent laugh in my throat
and that is no ordinary thing.